tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Anyone have a hard time getting over all that this disease has done to us and taken away from us?
At least for those with true PTSD, the traumatic event is over and they can move on, but for us it's always there.
So not only am I hung up on what I went through before getting diagnosed, but now that I am, I have to come to terms with the fact that I have a disease I may never get rid of.
My husband says I should go talk to someone. I said unless that someone also has Lyme Disease then it's a waste of $$ because only someone with this disease could understand the hell I've been through.
I say this website is the next best thing and he disagrees b/c he thinks I'm obsessed with this website.
This is the only place where I've been able to talk to others that are going through what I am and that's a good feeling after feeling alone for so long. This is part of my healing process and I don't think he sees it that way. Oh well.
So does anyone have any tips on how they've dealt with PTSD and how to stay optimistic even though we suffer from an uncurable disease?
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
I just want to let you know that I feel the same way as you.
I have become obsessed with this disease too and I can't stand that. My husband probably feels the same way that your husband does about it.
I do agree that it isn't always the best thing to sit around in your pajamas on a weekend, constantly reading about lyme disease- but I feel like you- that noone else understands and that we have to be our own doctors/researchers on a lot of this.
I was just thinking today that i should probably start limiting my time online and start doing some other things to get my mind off this. i know it isn't healthy.
I know this doesn't help you, but just wanted you to know that i feel exactly like you feel.
Posts: 871 | From NJ | Registered: Mar 2007
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
It does help Maureen. Thanks!
I'm hoping that this is just a phase I'm going through and that it will pass and I'll spend less and less time one here.
I'm feeling well enough now to do a lot of things I couldn't before but I take time away from my husband and daughter by spending time on here.
It is part of the healing process for me but I feel a little guilty about it.
Again, my diagnosis is new and I'm still coming to terms with things and it is getting better. My biggest problem is I'm terrified of going back to where I was. I am feeling better but I'm always worried that it won't last.
Posts: 2541 | From Northeast | Registered: Jan 2008
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bettyg
Unregistered
posted
i hope DAISE sees your post; she has this! if she doesn't, look for one of hers.
also we have phsychologists, psychiatrists, and psychophycologists as members here; hope they happen to come on and reply back to you!!
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Laura, There are some excellent therapists who are lyme literate in the area; pm me and tell me just where you are from and maybe I can suggest someone. EMDR is the best treatment for PTSD>
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I find my greatest support here.
That being said, it is easy to have an opinion about what is best for us
When you don't have Lyme.
My husband initially told me that it was my searching for and about
Lyme disease on the internet that would lead me to believing I had something that I didn't.
Ok sure. I guess the blood work doesn't count either.
Months later when he got sick....with Lyme it was a different story.
I should have PTSD. I have been diagnosed with it.
That is because the ducks I was seeing knew nothing of or about Lyme.
I have been through Katrina, lost my house, lived outside for 37 days
With a 2 and 3 year old. Had to sue our local government to get a permit
To rebuild. Just got that Jan. 23.
I guess I just have this outlook of well this is where I am.
I pray for remission, but realize I will be dealing with this disease
For the rest of my life. I have no control over that.
I try, for my children who also have Lyme, to be optimistic and hopeful.
I also have a neighbor, a lady, who has Lyme as does her parents and son.
It really helps to bounce this off each other.
We complain of being tired of feeling lousy or taking all these pills,
Or wanting something with sugar in it.
I think it is good to talk about. I wouldn't hesitate to speak with a counselor.
I pray all the time....this also helps me cope.
Hang in there. We are always here for you.
I told my husband that good or bad, this is my life.
I am going to do what makes me feel better.
I continue to be educated here daily.
That helps with treatment options and knowledge about Lyme that
My whole family benefits from. I do it daily anyways,
If not for them then for me.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I was just talking with someone today about Lyme. She asked me how I could laugh about everything that's going on.
It comes down to one simple truth: Lyme is NOT the worse thing that's ever happened to me.
I was dx'd with PTSD back in '99 for something else entirely.
I went through a horrific event. My attitude is "if I could get through that, I can bloody well get through anything now".
That past event and current attitude are what allow me to take this mostly in stride. Of course, I have random moments of depression, panic, despair, denial, etc. like anyone else.
Lyme is just one more *bleeping* opportunity for a learning experience (if you buy into that kind of thing).
Like the rest of you, I've found doing research and lollygagging on message boards to be highly therapeutic.
My husband has also accused me of becoming obsessed. And its true.... I have.
Its because of this obsession that I've finally found out what's wrong with me. This is after over a year of looking and umpteen doctors with no answers.
Obsess on! If it brings us comfort, peace, or whatnot, then there's no harm.
Besides, what else would we be doing on those days its difficult to get out of bed or off the sofa?
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Thanks everyone!
I do believe fighting this disease has made me a better person in a lot of ways. It has helped me put things into perspective as far as what is important in life.
Not to toot my own horn or anything but I use to be pretty hot stuff ! No more! This disease has taken that away but I think I'm a better person for it. On the days that I feel good that is more than enough to make me happy whereas before I took my health for granted. My little girl doesn't care that mommy doesn't have make-up on and is in her pajamas and that's all that matters! Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
I think it's totally normal that we find the most comfort here, because the truth is, people who don't have Lyme can't understand--even the ones who try really hard to understand.
I think what makes this disease even harder is that we don't always LOOK sick--and so even when people finally believe our diagnosis, there is still that thing that I feel coming from them...that they still can't understand how we feel so bad when we look so good. I feel like that somehow isolates me even more from other people. Fortunately, other Lymies understand that we still live in pain every day.
I did go on this site more when I was first diagnosed. I had the need to "obsess"--but I think that it really was that I needed to see every day that finally I wasn't all alone!
I don't go on so much anymore, I think because I have accepted my diagnosis and now I'm trying to do the most I can with it. But I can't say how thankful I am to have Lymenet!!
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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Seeing a councelor can help......when I was first diagnost it helped.
Also my husband and I went together... it did help.
When I first found this site i just couldn't believe the amount of people that are just like me....
i joked to my husband....."I finaly fit in.....I found my people!!!!!"......
I don't know anyone personaly who has Lyme.....
so to be able to come on here and read (on good days)......what others are going through....or helpful information is such a GIFT.....
I used to feel so alone........and I don't anymore....well maybe someitmes.....
friends and family have faded away....they are busy......busy like i was before Lyme.....
my husband has come on here and read some stuff ... I think it has helped him too.........
I told him maybe he should post a topic of ..... life with a wife that has Lyme....
he could use some venting ....to other husbands that are going through the same things that he is....
Laura........I try to look at life a little like this.....(on really good days)
some people look at the glass half full.... some look at it have empty.... I'm just glad I have a glass...... anything that goes in it is a bessing.....
anytime you feel like venting....i'll be on listening!! mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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Posttraumatic Stress Disorder (PTSD) is an anxiety disorder that can occur after you have been through a traumatic event.
A traumatic event is something horrible and scary that you see or that happens to you.
During this type of event, you think that your life or others' lives are in danger.
You may feel afraid or feel that you have no control over what is happening.
Anyone who has gone through a life-threatening event can develop PTSD. These events can include:
Combat or military exposure Child sexual or physical abuse Terrorist attacks Sexual or physical assault Serious accidents, such as a car wreck. Natural disasters, such as a fire, tornado, hurricane, flood, or earthquake.
After the event, you may feel scared, confused, and angry.
If these feelings don't go away or they get worse, you may have PTSD.
These symptoms may disrupt your life, making it hard to continue with your daily activities."
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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daise
Unregistered
posted
Hey everybody!
PTSD. Yes! Had it for decades. I'm now 56.
I worked on it, on my own, with a whole lot of inner work. Did vision quests. I came a long way with it.
But still--when I got hit with Lyme, I could feel the burden of the lowered PTSD that I still had, as well.
I felt this PTSD burden on my shoulders, and also felt the burden of Lyme on my shoulders: locked shoulder, severe muscle pain at neck-shoulders-in head.
I went to see a psychologist who does EMDR Level 2 for PTSD.
I cherished her.
You bring up visuals that plague you. Then the therapist or you do something repetitive, like clap your thighs or whatever, while you speak of it.
Then some or all of the fear/memory disappears. How?
Know one knows. It's been put forth that possibly the repetition of movement allows the "monkey wrench" in your brain to dissipate or to partly dissipate.
Immediatly the tears flow, for many.
It's been put forth, also, that the monkey wrench then disappears or partly disappears, helping your brain to think faster, thereby stopping the round and round and round and round of PTSD thinking.
That helps you get past it.
EMDR Level 2 helps you process visuals that hurt and are scary--images--so you can get past it.
No one knows why it works--it just does. It really is a phenomenon.
Insurance paid--yup!
Try calling your insurance company and say that you are looking to find a particular psychologist who deals with EMDR Level 2.
Took 5 sessions for my PTSD. DId 2 more sessions with her to do affirmations to help me with the horror of chronic Lyme disease.
I felt fortified!
I still have a little PTSD. I guess you will for the rest of your life.
The VA does not help veterans with PTSD.
They say they do, but I live in a place where everyone is a veteran, most are battle-worn and trust me--the VA does not help veterans with PTSD.
The VA's official excuse is, well, those who get PTSD already had PTSD from their childhood.
It's denial--like Lymies are treated.
I've heard the military--I forgot which branch--is starting to help troops in Afghanistan and Iraq with PTSD--right away after PTSD happens, by experimenting with EMDR.
IT'S ABOUT DAMN TIME.
Especially, our Iraq soldiers have been hard hit with PTSD.
posted
I know how you feel. I am a psychologist and I have Lyme disease. I do not specialize in PTSD.
My husband does not have Lyme disease, but is a psychologist specializing in PTSD.
He knows what I am going through as much as anyone possibly can who does not have this disease. He has also helped me through cancer which he has never had.
Most psychologists specializing in the treatment of PTSD have not been through the same events that their patients have been through and will never be able to truly understand.
Yet there is strong research supporting the effectiveness of cognitive-behavioral treatment of PTSD by someone who was specifically trained to treat PTSD.
Depending on where you live in Mass., there are many PTSD specialists. Maybe you could search for one who has a family member or close friend with the disease... this would at least ensure some understanding of your situation.
I am so sorry you are experiencing PTSD. It is a terrible condition.
Posts: 129 | From Virginia | Registered: Feb 2008
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! No more! This disease has taken that away but I think I'm a better person for it. On the days that I feel good that is more than enough to make me happy whereas before I took my health for granted. My little girl doesn't care that mommy doesn't have make-up on and is in her pajamas and that's all that matters! ![[Smile]](smile.gif)
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